| | Coping with MD?
(I posted something similar on the general "disability" board before finding this one. I think the answers here might be more relevant.)
I'm a 31 year old man living in Australia... who just also happens to have muscular dystrophy. I can't tell you what type because nobody seems to know. I've had muscle weakness since birth and could never walk, but by age 25 I was ventilated at night with a tracheostomy, and could not support myself fully even when just sitting--20 years earlier, I could use crutches, was playing the piano, drawing, etc., but that all slowly slipped away between 1986 and 2003. By 2003, I was chair-bound and even unable to write.
Then I suffered a brain hemorrhage at age 25, which left me bedridden for four years. I am now on a ventilator 24/7, but have a power wheelchair. Despite all this, I have gotten a degree in Computer Science and am now progressing towards a PhD.
Anyway, I'd really like some insight into how other people feel about living with disability and degenerative conditions such as muscular dystrophy in particular.
So let ne ask: What is your biggest fear or frustration?
What worries you the most?
I'd really love to hear other people's thoughts on this. It's nice to know you're not alone.